Alivia was recently diagnosed with Cushing's - Alivia has passed

[labblab]

Hi again, Mary Beth.

I don't pretend to be an expert re: all things Cushing's -- not by a long shot. Over my years here, I've had my eyes opened multiple times. Just when I think I've got something doped out, a new fact or approach may appear. However, when it comes to "Atypical Cushing's," I've always felt that Dr. Jack Oliver at UTK truly has been a premier scientific authority on the subject. He is no longer alive, but as I say, I don't believe Caroline Levin's theory/approach is new, and it is something that he would have had the opportunity to investigate and subsequently endorse if he believed it had merit. Over-the-counter melatonin and lignans have remained a first-line recommendation of UTK, and neither of those drugs are expensive nor fancy. So I don't believe there would be any financial motivation for them to ignore prednisone if there was evidence that it was helpful.

The thing is, prednisone is not a benign drug. So even at a low dose, I would personally want assurance that there was a valid, solidly researched basis for administering it to my dog. As far as I know (and once again, of course I don't know everything ), I am unaware of any veterinary endocrinologist who endorses this treatment.

As far as financial incentives, here's a link to the "Order" page for Lantern Publications which is listed as the publisher of Ms. Levin's research summary. You will see that Lantern publishes her other materials, as well, and that payment for books and DVDs goes directly to Ms. Levin.

http://www.petcarebooks.com/orders/ordering.htm

Marianne

[MBK]

Leslie,

I do agree with you that you cannot look at any single source. I also think the "experts" have not done a great job when it comes to treating canine Cushing's. The current choices are selecting the lesser of two evils : Mitotane (a derivitive of the pesticide DDT) and Trilostane. Although both of these can have good results, no one here would ever say that either of them were perfect treatments and not without serious risks and considerable expense. When it comes to treament for Alivia, I am definitely between a rock and hard place. I have an e-mail from Dr. Oliver advising me against using Trilostane because it would increase her sex hormone levels and she would still exhibit all the symptoms of Cushing's. Lysodren is not a good option for Ali as she does not and has never had the consistent ravenous appetite that most cush dogs exhibit and it would be impossible to know when she was on an appropriate dose. Because of that, Dr. Oliver's only suggestion was to try a maintenance dosage of Lysodren, but even he admitted there were no studies on that treatment:

Me: You brought up the option of using melatonin, lignans and Lysodren without the loading dose. This sounds like an interesting option, but I can’t find any additional information about that treatment or its success rate. Could you direct me to any studies/journal articles/etc. of results with this treatment?

Dr. Oliver: Unfortunately, I don’t know of any good studies. But I can tell you that many veterinarians use this protocol, and seem to like it. I’ve seen repeat adrenal panels for dogs with this treatment, and they usually show a good response. Certainly maintenance Lysodren has been used for years, after the loading dose is given, so maintenance Lysodren is safe as long as you measure the cortisol levels. The same is true of melatonin, lignan and maintenance Lysodren; it’s important to measure the cortisol levels just like you would with the traditional Lysodren treatment where induction was used. [copied and pasted verbatim]

So, that was an expert on cushing's suggesting a protocol and candidly admitting there were not really any studies to back it up. (Marianne, I had typed this before seeing your reply mentioning Dr. Oliver!). I do have the utmost respect for Dr. Oliver and all he did and I had several email communications with him. He was kind enough to review all of Alivia's test results and personally comment on them. He also was honest enough to say there was no good answer for her.

I had actually purchased Lysodren but just did not feel comfortable giving it to Alivia with no studies to back it up. Maintenance doses of Lysodren (potentially a very dangerous drug) have not been solidly researched in Dr. Oliver's own words.

I just don't feel like there is much of an effort in finding any better, safer ways of treating cushing's and perhaps it is because there is a lot of money being made the way things stand. There are treatments being used by vets with not a lot of scientific evidence to back them up. It just seems like a crap shoot at times.

As far as Ms. Levin making money, a lot of people and companies are making money off of all of us treating our dogs. So, that in itself is not reason enough for me to discount her opinions.

I am keeping an open mind about all of this: holistic, herbal and anything else. Many dogs do get good results from Trilostane and Lysodren, so I certainly do not intend to discourage their usage. It's pretty much all there is right now. I would love to see continued research and better options, though.

[addy]

When it comes to treament for Alivia, I am definitely between a rock and hard place. I have an e-mail from Dr. Oliver advising me against using Trilostane because it would increase her sex hormone levels and she would still exhibit all the symptoms of Cushing's

Sweetie, that is what Dr. Oliver told me about using Trilostane with Zoe. I turned to Dr. Peterson and he felt Zoe would be better off on the Trilostane. Dr. Peterson told me I should not even know about her intermediate hormones at that point. He felt the lysodren and her IBD would be a problem and with Trilostane I could start and stop the dose without worrying about losing a "load".

Point is, MB, we all make decisions and follow our heart with as much information as we can glean from the experts. My IMS gets frustrated because even the endocrinologists cannot agree.

I do wonder sometimes if the increase in macros we have seen is because of the increased usage of Trilostane. I think we would all prefer not to use either drug.

I am sorry Alivia's symptoms are coming back. I had Zoe on melatonin and lignans for quite a while before starting Trilostane. She was doing okay, not horrible symptoms except her coat and skin were getting worse and her back legs.

Her cortisol was sky high but her intermediates did come down. Dr. Oliver gave me the maintenance dose option too. You never know if it will work or not. I have read on other forums that dogs responded to that treatment without loading. Perhaps their cortsiol was not so high as Zoe's.

All we can do is try what we think best in our hearts.

love ya

[labblab]

Hey Mary Beth,

I definitely agree that there is no perfect solution to Cushing's treatment and that there is much more research to be done. However, I think that the research arena differs considerably between conventional Cushing's and what UTK has labelled as "Atypical Cushing's." I do agree that the significance and ramification of elevated intermediate hormones other than cortisol is currently an under-researched and controversial area, as is effective treatment.

I don't believe the same can be said for conventional Cushing's. Since I used trilostane with my Cushpup, I am more familiar with related research studies for trilostane than those that may exist for Lysodren. But I can guarantee you that there are a number of serious, scientific, peer-reviewed research studies that have been generated in association with trilostane treatment. And I am aware of NONE of them which advocate giving supplemental prednisone to a dog who already suffers from elevated cortisol.

When Dr. Oliver spoke to you about the lack of good research studies, I would guess he was referring to treatment of elevated intermediate hormones other than cortisol -- and not conventional Cushing's. There has been a LOT of research concerning conventional Cushing's. And once again, in my own mind, if giving low-dose prednisone seemed like a more reasonable option for treatment of "Atypical Cushings" than those recommended by Dr. Oliver and UTK, I would think that somebody, somewhere (other than Caroline Levin) would have picked up on it.

But I'll go ahead and shut up now, because truly, you need to do whatever you think is best for Alivia. But I do think there has been a lot of academic research conducted re: treatment of conventional Cushing's and associated medication, and I just want to point that out to others who may be following our discussion here.

Marianne

[Boriss McCall]

Addy,
I was wondering the same thing about the Trilostane & Macros. I was talking with Kim about that same thing recently. I know she had mentioned that this forum is seeing way more Macros that ever before.

Makes me really wonder if Trilo has anything to do with it & maybe I should be treating with Lysodren. Such hard decisions to make.

I would love to do a poll on this board of to see if the dogs on here with Macros past & present were all treated with Trilo or are both drugs showing these.

[labblab]

Addy,
I was wondering the same thing about the Trilostane & Macros. I was talking with Kim about that same thing recently. I know she had mentioned that this forum is seeing way more Macros that ever before.

Makes me really wonder if Trilo has anything to do with it & maybe I should be treating with Lysodren. Such hard decisions to make.

I would love to do a poll on this board of to see if the dogs on here with Macros past & present were all treated with Trilo or are both drugs showing these.

Theoretically, both trilostane and Lysodren ought to have the same effect re: macros since it is the disruption to the ACTH feedback loop (which both drugs create) that probably hastens tumor growth. There is at least one research study that established this potential for trilostane; it has not yet been documented for Lysodren.

One thing to keep in mind re: what may appear to be an increase in macros: very few are actually definitively diagnosed via MRI or CT imaging. So we are making a lot of assumptions based on symptoms that MIGHT be related to a macro, but also might not. That was the case with my own Cushpup. He developed problems that could have been consistent with a macro, but he might have had a different type of brain tumor altogether or even some other issue that was causing his problems. But we never pursued the imaging that would have told us for certain.

Over the years, we have become more familiar with macros here on the forum, so I think we may be more quick to ascribe problems that appear in our dogs to macros than we might have done in the past. So that may contribute to our sense that macros are more common, whether or not that is actually true.

(And Mary Beth, thank you for allowing us to hijack Alivia's thread for a little while here!)

Marianne

[addy]

I am glad we can have these conversations as it is helpful to us all
and yes MB, we thank you for allowing us to high jack your thread. There are always so many decisions to be made by each of us, it is so hard to see the right path sometimes.

I think most importantly, whatever path we all chose, we should not feel quilty and play the "if only" game. We all love our dogs or we would not be here and we all do the best we can with the love and support of our family here. IF we have to always remember that we really do the best we can.

love you all

[Boriss McCall]

[QUOTE=labblab;83386]Theoretically, both trilostane and Lysodren ought to have the same effect re: macros since it is the disruption to the ACTH feedback loop (which both drugs create) that probably hastens tumor growth. There is at least one research study that established this potential for trilostane; it has not yet been documented for Lysodren.

So, by the disruption to the loop it could cause the tumor to grow? Am I reading this right.
If that is the case why would we ever want to stop the loop? I might be confusing what I am reading.

Sorry to high jack little Alivia's thread one more time. I just want to make sure I understand.

[labblab]

Amy, here's a quote that may explain the effect more clearly. And as I said above, there is now at least one study that has indeed documented the potential for the effect with trilostane.

Because most chemotherapeutic agents have no effect
on the pituitary itself, they do not inhibit ACTH secretion,
which may actually increase with therapy.This phenomenon,
known as Nelson’s syndrome, has been well
documented in humans with pituitary tumors treated
with bilateral adrenalectomy. Nelson’s syndrome refers
to rapid enlargement of a pituitary mass that occurs after
loss of negative feedback from adrenal cortisol production,
which has an inhibitory effect on ACTH release.
While this phenomenon has been suggested to occur in
dogs, studies have shown no correlation between
treatment with mitotane and pituitary size or rate of
pituitary tumor growth. However, because the exact
mechanism behind the development of Nelson’s syndrome
is not completely understood, the potential for tumor expansion
as a result of adrenal corticolysis or decreased cortisol production seems plausible.

http://www.k9cushings.com/forum/showthread.php?t=229

My own thought is that this possible effect probably should not be a reason for owners to opt out of Cushing's treatment for otherwise strongly symptomatic dogs who don't exhibit neurological issues. Across the board, it is not common for canine pituitary tumors to enlarge to a size sufficient to cause major neurological problems. And so when weighing quality of life issues, it is important to consider the damage/discomfort that is known to be associated with untreated Cushing's in symptomatic dogs. My own dog was miserable prior to starting trilostane treatment. He then had several months in which he rebounded prior to exhibiting serious neurological abnormalities. So even had I known that the trilostane might hasten the growth of his enlarging tumor, I still would have chosen to treat for those months in order to relieve him of his awful Cushing's symptoms.

Marianne

[Boriss McCall]

Thanks Marianne,

I do agree quality of life is very important. But, I don't think it hit me until just now after reading this article the meds can make the tumor grow faster.

But, on the other argument these tumors continue to grow either way with or without treatment. ugg.. this all just sux.